'My cancer left me too tired to work'

When Tilly Casson returned to work after treatment for breast cancer she was constantly fatigued.

She had to work 12 hour days, including a lengthy commute, and was in bed by 8pm every night.

She knew a short nap would help her survive the day better and looked longingly at the bean bags dotted around the offices where she was working, but felt unable to use them.

Just months after returning to work Tilly, a 49-year-old IT manager was signed off sick again, this time with clinical depression.

No practical help

"I just came to a standstill and spent all my time crying," said Tilly.

She says a lack of information about how to stagger the return to work was to blame.

However sympathetic people are there is always the thing in the back of their heads 'what if she gets it again'

Tilly Casson

"When I asked my oncologist and my GP if I could go back to work they just said 'when you think you can handle it, you should go back to work'.

"So I started two days a week, then three days, then four.

"I devised the return schedule myself. Nobody told me whether the plan I was working to was good or not. I was increasing my time by a day every week.

"Nobody had checked with me what my job involved and it involved a lot of travel and lugging around a lap top and working with clients.

Some cancer patients suffer terrible fatigue

"I work for a small company so we have no things like human resources and things like that.

"Although everyone was very kind, there was no practical help.

Constantly tired

"One of my biggest problems was fatigue. After the cancer treatment you do get tired very easily.

"Whether it is concentrating or whatever you are doing you want to say 'let me go away and have a nap.'

"I would not have got so low and crashed so heavily if right from the start I had not been given such duff advice, if I had someone to talk to," she said.

After her depression Tilly was given professional help and advised to take time off. She then made a staggered return to work increasing her days very gradually. Last month she returned to work full-time, nearly three years after her diagnosis.

But despite her employers being supportive, Tilly does feel her having had cancer will be a bar to future employment prospects.

"I do feel my prospects are not as good because if I applied for a job, however sympathetic people are there is always the thing in the back of their heads 'what if she gets it again'.

Returning to work

In the UK, 90,000 people of working age, like Tilly, are diagnosed with cancer each year and the numbers of people surviving and returning to work after cancer are growing.

But in a recent study, carried out by Cancerbackup, one in five cancer patients reported that their job satisfaction and career prospects deteriorated following their return to work.

Many said they did not always receive the information, advice and support they needed and some employers admitted they do not know how to best support employees who are diagnosed with cancer.

Now Macmillan's Cancer Research Unit at the University of Manchester is aiming to help produce guidelines for employers, line managers, occupational health services and patients to ease the return to work.

In the past a cancer diagnosis was really a devastating blow, but treatments are now very much better so the treatments have improved, but our attitudes remain much the same

Dr Stuart Whitaker

Dr Stuart Whitaker, an occupational health expert at the University of Cumbria who is working on the study, said they aimed not only to set up guidelines, but also to run trials to see whether giving structured specialist advice from occupational health aids the return to work.

He said: "The 10-year survival rate of cancer sufferers has doubled in the past 30 years and this positive trend is likely to continue in the years to come, meaning it is vital that employers and former patients are offered the correct support.

"Ultimately we hope that this study will improve education of employers, help to develop and test effective models and to allow people to make a smooth transition back into working life.

"In the past, a cancer diagnosis was really a devastating blow, but treatments are now very much better: the treatments have improved, but our attitudes remain much the same."

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